The Special Guide

My Hat's Off To You All You Single Ladies!!!!

2012-12-02T04:11:00Z

My hat’s off to you all you single ladies!!!! I’ve always held you all in high regard because I know you do so much. But a couple of weeks ago, it really, really hit home. My husband had minor surgery and was out of commission a couple of days (maybe weeks). It was just me, myself and I trying to hold it all together. Of course the kids would have those days off from school too, and of course they'd come down with colds then. Let me tell you – trying to juggle work, caring for and entertaining the kids and keep them from destroying everything (especially the autistic one) – wore me out. It way me out waaaaayyyyy more than I’m already worn out. And I wasn’t even all alone. I had my mother in law here (but you all know how relatives are – they’re “kind of” helpful). We all know that husbands only do about 1/3 to 1/2 of what the wife does. But that 1/3 to 1/2 is so much better than 0. I started worrying about what would happen if he died before me, and what I would do without the 1/3 to 1/2. And then I worried all over again about what would happen if we both died. But let’s all not worry about that for now. I’ll save that for another day. The point is – single moms – you guys do a lot!!! And you deserve tons of recognition. And to use the phrase in the best sense of its meaning – I don't know how you do it!!

Working While Trying To Do Everything Else

2012-11-19T04:10:00Z

Recently, a departure memo that a working mom wrote made the rounds on the Internet. She chronicles a typical work day – almost minute by minute. Here is an excerpt. A day in the life of Ms. X: -4:00am: Hear baby screaming, hope I am dreaming, realize I’m not, sleep walk to nursery, give her a pacifier and put her back to sleep - 4:45am: Finally get back to bed  -5:30am: Alarm goes off, hit snooze  -6:00am: See the shadow of a small person standing at my bedroom door, realize it is my son who has wet the bed (time to change the sheets) - 6:15am: Hear baby screaming, make a bottle, turn on another excruciating episode of Backyardigans, feed baby  -7:00am: Find some clean clothes for the kids, get them dressed  -7:30am: Realize that I am still in my pajamas and haven’t showered, so pull hair back in a ponytail and throw on a suit  -8:00am: Pile into the car, drive the kids to daycare  -8:15am: TRAFFIC  -9:00am: finally arrive at daycare, baby spits up on suit, get kids to their classrooms, realize I have a conference call in 15 minutes - 9:20am: Run into my office, dial-in to conference call 5 minutes late and realize that no one would have known whether or not I was on the call, but take notes anyway Click to see the full departure memo. Put aside any negative feelings you may have about lawyers, and think back – doesn’t or didn’t this apply to those of you too that worked outside the home? This memo reminds me of my first few years of work after my first son was born. Juggling work and children is very hard for any person, but when a special needs child is involved, it becomes virtually impossible. Employers are understanding for a little bit – but there is a limit. When it is a little old special need, and a little old disruption, they can deal with it – but when it looks like there is no telling when the end will be – not so much. In my case, this phase that most other moms go through for a short while (when their kids are infants) went on for AT LEAST 5-6 years. (It got easier after the first 5-6 years largely because my husband started to stay at home to take care of the kids.) I was working with “one arm tied behind my back,” so to speak. It was/is a true juggling act. I watched people that weren’t nearly as good as I get farther ahead. In some ways, I had to accept being somewhat mediocre. And I am not a person that is fond of mediocrity. I know there are many of you out there that can relate and have been forced to kind of, sort of accept mediocrity when you never otherwise would have -- had you not had all sorts of other things to juggle. Like many other things, the problems we face – working and raising kids – are just like other people’s problems – except they are magnified and are to the extreme. Is it possible that after a while (say a decade or two), you can catch back up to where you should have been? I don’t know. It probably depends on the particular situation. I’ll let you know what happens with mine.

Hard Work, Luck and Guilt

2012-10-10T04:09:00Z

I was reading an article in the local paper recently about how tirelessly a mom worked once she found out her child had autism. I mean she worked around the clock to research all the therapies, schools, doctor etc. out there, put her career on hold, and dedicated her life to working with her child to be sure that he could make as much progress as possible. And then just the other day, I was talking with this wonderful co-worker and she was telling me her friend had a child with autism. She said “luckily, the mom intervened really early on, and worked really hard for years, and now he’s doing great.” Aaaaaaaargh!!! I intervened really early too! I’ve worked really, really, really hard for years now too. I researched the heck out of everything there is to research. My career certainly got put on hold. And yet -- my son hasn’t made as much progress as those other mom’s. There is no formula – if you do x + y, then your child will make a specified amount of progress. If it were that easy, if we all knew what the trick was, we’d all be doing it. It isn’t that easy. There is no telling when and how much progress your child will make and how responsive he or she will be to something. Our knowledge of what works is actually quite limited. So please other parents, media and society at large – if your kid is doing great, that is absolutely awesome for you, and I am sure you HAVE in fact worked tirelessly and deserve every bit of good things coming your way – and you are awesome – but simply put, you are also LUCKY. There are an awful lot of others that are working just as hard, if not harder, and not finding quite the luck/chance/fate (whatever you want to call it) that you’ve had. (By the way, I am reminded of this awesome post on Parental Guilt – which you should definitely spend a few minutes to read.)

The Joint Ventureness of Marriages

2012-09-12T04:08:00Z

Marriage is hard work for anyone – but particularly hard for the parents of special needs children. As you all are well aware, there is a lot of stress they have to weather. For my official (i.e., "paying") job, I frequently draft agreements for “joint-ventures” that businesses enter – and one day it occurred to me how much of a joint venture my marriage felt like. There are so many things that need to be tended to; so much work that needs to be divided up that the marriage seems like a true contract under which my husband and I agree divide up all the tasks and agree to terms as to undertaking and carrying out of those tasks. There is a lot of time spent on getting things done logistically, and achieving the care of the children. (I can’t even stop myself from using contractual lingo in writing this post.) And for those of you that know my husband, you know that he is such a nice co-venturer to do business with -- I mean be married to. So, it is just such a darned shame that we have all this stuff that needs taking care of, that leaves little time to focus on your spouse as someone other than a co-venturer, to do non-joint venture related things. Do marriages of people without special needs kids have this joint-venture feel to them? I'm sure they do, at times. But it seems like everything is magnified in our lives -- every issue shows up more because of the "extreme" parenting involved. Very hard to break out of this little rut here without any family nearby, or more of a support system. There is an obvious solution -- which is to have family close-by or other support system that can kick in and be -- well, supportive. Trust me -- if it were easy to get those things, we would have gotten them by now. It isn't so easy -- for us anyway. Do I have a point here? Some wisdom? No, not really. I was just hoping some of you would commiserate with me.

Update on Ryan

2012-08-21T04:07:00Z

You met Jan and Ryan on our site a little while ago. They’ve had a lot to deal with the post month or so. As we wrote about earlier, Ryan is a 14 year old sweetie who has cerebral palsy, scoliosis and has had 3 open heart surgeries. July 24, 2012 he had to have scoliosis surgery. When the doctors did his scoliosis surgery, they made it clear that infection was the biggest obstacle. In Ryan’s case, they had to be especially careful because he is a Fontaine baby (basically he has only 1 ventricle). It has been a grueling few weeks for the family because of the physical pain associated with the surgery, and the added discomfort of not being home. And then cutie pie Ryan got an infection! He had a bacteria from the rods called pseudomonas. The doctors literally washed off the rods and cleared the tissue inside. Ryan then got a PICC line put in. Jan will be giving him antibiotics through that IV for 6 weeks, 3 times a day. After that he'll be on oral antibiotics twice a day for 3-6 months. His back is healing nicely and Jan is amazed at how the body heals and how strong he's remained every step of the way. He has lost a lot of strength in his limbs and they’ll be doubling up on his OT/PT. This week Ryan FINALLY came home. We have never met Ryan and Jan in person – but are just amazed by them. Ryan, you are one strong and awesome kid, and Jan, you are an awesome mommy. They faced their challenges with such amazing grace and strength. We are thrilled to hear you are home now Ryan. We wish you a speedy recovery. We can’t wait to see more of your thumbs up pictures. (For those that don’t know – Ryan’s signature move is a “thumbs up” he does that you can see in his pictures. He’s working in his therapy to do his signature thumbs up move again.) The Special Guide and all its users sends you our very best wishes Ryan. (Ryan’s really enjoys hearing his mom read the messages people leave him on facebook. You can leave one below if you’d to show some support for Ryan.)

All About Me!

2012-08-17T04:06:00Z

I’m a 42 year old mother of 2 children – both adorable; one typical and one with autism (non-verbal, non-high functioning. Married to a solid guy who is a stay at home dad and takes care of the kids during the day. I work relatively long hours at a job most would call high stress – though some would say it provides a nice break from the 24/7 special needs cycle. My take on it depends on the day. Some days I leave home, with a definite “whew!” feeling, happy to be going to assume my 2nd identity. Other days, I wish I was the one staying home with the boys. I love cheesy TV shows, high-heeled shoes, 90s music, collecting workout DVDs that I don’t do, watching Food Network cooking shows for things I’ll never cook, and would win any pop-culture trivia game. In an alternative life, I imagine I would have gone into the entertainment industry or something. But – too late now, right? If my blogs and facebook page are quiet some days – it is because real life got too, too busy for a bit. If my blogs are sort of all over the place in terms of emotion, it is because that is how I feel them. My emotions go in cycles. There are times I’m pretty happy and content with life, there are times where my anxiety about my son’s future after me and my husband pass almost overwhelms me; there are times when I throw myself one giant pity-party – but others where I marvel at how much goodness I have in my life. I’ve been doing the special needs life for about 10 years – so the down times are fewer than they were before – but I’d be lying if I said they weren’t still here every so often. The blog is just a fun, stress-relieving thing for me. I would hope that no one that disagrees with my take on something would stop using the site – though I’m always thinking about that, and probably shy away from writing some things I’d love to really write about. Why I created this site? Looking back, I almost cannot believe that I did. Truth be told, if I hadn’t been so incredibly frustrated in trying to find good people to work with my son, I probably wouldn’t have done it. It’s a zoo out there. Plus, I felt like there needed to be some sort of check on the not so great people trying to sell their services. I won’t mention any names, but I’m pretty proud that a couple of the ones that I always felt were shady have been called out by parents on the site. I feel enriched to have met all the parents I’ve met through the site. I’m a naturally shy person, and have too much on my plate to do any sort of “support” activities --- but this site has been kind of a natural support group. I never would have gotten to know parents from so many different walks of life with so many different views on all things special needs related. That part is kind of awesome. I myself have my own reviews on the site. I try hard to remain anonymous because I want the site to be a forum for information from everyone – with all sorts of different opinions. For example, I honestly don’t think my son gets anything out of OT once a week (or even 2x a week). As a friend joked about his own son - it is like-bench pressing once a month. But I get that for other kids OT is helpful; so naturally, I want the site to list all OT related information. The point of the site is to get as much information out there as possible. In my opinion, the more openness and information there is out there, the better off we are, and the better decisions we can make. Parents in the special needs community (like any other community) have lots of different opinions on causes, best therapies, treatments, attitudes etc. However, the one thing that unites us is that we ALL want the best for our children.

Amy's Story

2012-07-17T04:05:00Z

Amy is one of our first users. Recently, we found out about her amazing trial with stem cell surgery. We always read about these things but never knew anyone in real life that had experience with it: "The Special Guide posted an article on its facebook page about stem cells surgery having potential to help children with brain injury. My son is one of those children. Here is the story of our experience with it. My 9 year old son has severe cerebral palsy. He is in a wheelchair, non-verbal and totally g-tube fed. Last year, we used Justin's own stem cells from his bone marrow that was taken from his hip. They then spun the stem cells out of the bone marrow. Then they inserted the stem cells into his spine via spinal tap where the cells travel to the brain to repair the injured part (CP, by definition is an injury to the brain). The procedure can be done in 3 days. The procedure is not allowed in the US so we had it done in Germany. We've seen good progress in areas such as initiation of movement (which has enabled Justin to start using an iPad for communication); less spastisity; better fine motor skills; better visual tracking; and increased cognitive abilities. My son is incredibly sweet and fun to be around. He has taught me many important life lessons like the importance of looking at the positive. I am very pleased that the procedure has allowed him to be able to communicate better with us and be more independent." If you have a question for Amy, you can post it in the comments section.

Our Vacation To The Big Apple

2012-07-16T04:04:00Z

When Big Man entered Pre-K, during his first week of school, the homework assignment was for the kids to bring in 5 pictures from their summer vacation. We had none. Back then, we could take no vacations, and we also generally didn’t take many pictures. Too hard; couldn’t cope; I'm sure you get it. As you all know, vacations are tough for special needs families. They are logistically difficult to begin with; but then also made more difficult because there are all sorts of new people at every turn that don’t know your story or what to make of you. Over the years, we have worked our way up to short vacations. This year, for July 4th, we went to the Big Apple! That’s a tough one for special needs, no? My family is from NY anyway, so we thought we'd spend a couple of days in The City before we headed over to see them. Here are the lessons I’ve learned so far from this and my other vacation experiences: July 4 – Atlanta Airport. Went straight up to the handicapped sign in the security line and told them we were traveling with our son who has autism, who doesn’t speak and could not handle the long-line. They let us straight through through, and everyone extra nice to us. We did the same with security personnel, and flight attendants too. Lesson learned: Definitely do this on the next trip! Made it so much easier. Practically felt like a VIP. July 5 – People were pretty nice to us all throughout Manhattan. A few times, Big Man would do something unusual --- like walk right into people’s personal space, or not move when they’d say “excuse me,” as he stood, blocking their path. I’d tell them he has autism. The comment I heard most often? “That’s fine dear.” Most people were considerate. People made room for us to sit together on the subway -- that sort of thing Lesson learned: There are nice, understanding people everywhere. July 7 – Took the Long Island Rail Road from Manhattan to Long Island to see my parents and rest of the family. Big Man and I sat in 2 seats that faced 2 other seats. We sat across from a rather large man, who sighed heavily and rolled his eyes every time Big Man (who is pretty fidgety) accidentally brushed against the man’s leg. Then, Big Man picked his nose (he has a bad habit of doing so without a tissue - but he only did a teeny bit). The man gives the dirtiest look and says: “You might want a tissue or Kleenex”; he reaches into his bag and hands Big Man a tissue. I let it go because I thought there was a chance he was trying to be helpful. But then the obnoxious sighs and eye-rolls kept getting stronger and convinced me he was not a nice man. After a particularly obnoxious sigh, I said to the man, “He has autism you know.” You’d think he’d say something like “Oh, I’m sorry about my behavior.” But no. He says “He’s hit my leg like like 3 times already!” Me: I just told you, he has autism. Man: Now I know. You should have told me sooner. Me: The obligation is not on me to tell you. The obligation is on you to be aware of your environment and others around you and considerate of their differences. Silence Me: Your attitude is really bothering me. You should change it. Man: Oh really? For you? Me: No, for the betterment of society in general. Man: Oh, yeah? Me: Yeah. Then the man pretended to sleep the rest of the ride. Lesson learned: Every place has its a**holes – but Long Island, NY sure seems to have a disproportionately large number of them. July 7-8 – All my nieces and nephews came over to my parents house. It was loud and crowded. Big Man can now handle the crowd and noise. He enjoys having the kids around him, but he doesn’t know how to interact with any of them. So, for the most part, they just sort of ignore him. He enjoys having them play around him, even if not with him. It is bittersweet to watch. It is nice to see Big Man enjoying their company so much. But it reminds me how unfair life is for him. Things that are so easy for other kids are sooooo hard for Big Man and he tries soooo hard. He does the best he can. Overall lesson: We’ve come a long way, but we’ve got such a long, long way to go. I hope society keeps getting more aware, and as a result more considerate. I hope Big Man always continues to grow and learn, and that managing life gets easier and easier for my boy.

Needed: A Good Comeback For This Type of Person

2012-06-28T04:03:00Z

This post is being written from the lobby of a movie theater, where I am sitting – thoroughly annoyed. I brought the boys to the movies (Madagascar 3) with another mom. It has taken us years to took years to build up to going to a movie. Big Man does not sit through the movie. He just walks in and out of the theater every few minutes. He actually doesn't follow the movie at all. He's mostly here for the popcorn (which he enjoys eating - and even more - stimming on) and the soda he's allowed to get at the movies. So anyway, my little one is inside with the other people we came with. Big Man and I are in the lobby. We just got out popcorn and we are making our way back towards theater 3. Big Man is doing his usual strange walk -- where instead of walking towards the right hand side or the left hand side of the hallway, he walks smack in the middle, so anyone walking behind us would have a hard time passing us. This woman (big, fat and mean woman I should say), her husband, and 2 kids are behind us. Big Man is walking really slowly. She is trying to pass I guess. She says "excuse me." Naturally, Big Man doesn't even realize she is talking to him, or that she wants him to step to the side. Before I can take him by the hand and move him aside, she says "Excuse Me" again in a rude, loud tone, turns her body to the side and squeezes through with her kids." Then she says under her breath – but loud nonetheless -- "to the side." I think she may even have done a hand gesture to motion for us to scoot to the side. And you could tell she thought she was all clever, and all telling us off and putting us in our place. I had a 1 - maybe 2 - second window where I could have said something to her. But I didn't think of a good response quickly enough -- and the moment passed. And she walked on smugly! And now I'm sitting in the lobby, completely annoyed and sulking. I feel like the world is full of mean, uncaring people. All it takes is one mean person to trigger that feeling. You all know what I mean. I’m sure it is temporary – but for now all I can focus on is the one rude person. So, I'm sitting here in the lobby. Big Man is playing with his popcorn and soda. I am writing this, and plotting what I would say to her if we run into her on our way out. What would be a good comeback? Even if I don’t use it on her, I can keep it in my back-pocket and use it the next time something like this happens. What snappy thing should I have said? So, I'm not left with that "could've, should've, would've -- but didn't!" feeling next time.

Men are from Mars and Women are from Venus?

2012-06-14T04:02:00Z

My husband and I have very different approaches to announcing/dealing with my son’s Autism to the general public at large. A few examples: Airport / Airplanes. My husband prefers to try to stand in the general long security line and proceed, generally unannounced. I, on the other hand, prefer to go to the Family/Special Needs line – even though I know they’ll give us a questioning look saying “You all look fine to me; why are you in this line.” Then I’ll have to explain to them my son has Autism, and if I’m lucky, they’ll know what it is. If I’m not lucky, I’ll have to explain to them that it is a special need, and he will have a meltdown in the general line. That is way too much trouble for my husband, so he’d rather take his chances in the regular line and cross his fingers that it’ll move quickly. Same thing once we get on the airplane itself. I like to waive down a flight attendant and let him or her know that my son has Autism. That way if he bangs the window or makes amazingly loud noises while he’s coloring his book, they won’t freak out and think something dangerous is going on. We’ll get the luxury of an extra minute or so to try to calm or quiet him before someone comes over to see if something is wrong. Doctors’ offices. Same deal. I like to go up to the front desk and tell them he has Autism and he’s going to be loud, etc., in the waiting room. So, the faster we can get to the doctor, the better. My husband doesn’t. He prefers to take his chances and wait it out. Park. If we’re at a park and I see another kid repeatedly trying to get my son to answer a question, I tell the other kid and his/her parent if they are around, that he has Autism – blah, blah, blah. I’m not sure if my husband does. One time he told me he was at the park and there was another kid, and as the other kid’s mom walk past my husband – she gave him a really dirty look. He chuckled “Big Man must have done something.” If I had been in that situation, I would have totally been watching the whole time, and immediately told the other mom my son has Autism so they adjust their expectations and responses. My husband? No, not so much. General. One time, when my older son was 3, and the younger one was a few months, we were at a Barnes and Noble. I was reading to my little one in the baby section. All of a sudden I heard “OH MY GOD, HE'S NAKED!” I knew it had to be my older one. I ran over to see what was going on, and saw that my older one was not only completely naked, but had also decided that the spot next to the train table was a great one to pee in. My husband ran over, fast as lightning, scooped him and ran out of the bookstore to our car. No explanation to anyone --- just ran out. And what did I do? Well, this one time, I did the exact same thing – I ran the heck out of there, baby in tow. (Even I agree that some situations are best dealt with by getting the heck outta there. Sorry people that go to the Barnes and Noble on Edgweood Avenue! I'm sure they cleaned it up really good!) Here is why I do what I do: I feel like it is best if people know – like I said – so everyone adjusts expectations and behaviors. Even though my son is by no means high on the spectrum, it is often hard for others to know he has Autism if they only see him for a few seconds (he can “pass” for a few seconds), or if they don’t know too much about Autism. So, rather than deal with drama, I prefer on the front end to attract a little bit of attention by letting people know. I’m not quite sure why my husband prefers his approach. Maybe he truly, honestly doesn’t care about the drama; or maybe he just hates explaining to people on the front end. I don’t know. Do you think is a man versus woman thing? Have you noticed your spouse take one approach over the other?

Special Needs Parents - Not Too Many A**holes

2012-05-17T04:01:00Z

I ran across this quote on the site of a great blogger – Leigh Merryday. “Yeah, but this is a group of people who understand heartache. Folks like that aren’t the type anymore to get overly upset or judgmental about things that don’t really matter. They know the difference too well." -Leigh’s Dad (upon hearing her remark about the incredible degree of acceptance and good sense she’d recently discovered about the special needs parenting community) What a wise man. I’d always thought the same thing, except that in my simplistic way, I’d thought of it more as: GENERAL POPULATION: plenty of a**holes SPECIAL NEEDS PARENTS: not too many a**holes Isn’t that the truth people? We've taken our experiences and become better people (and most of us were pretty good to begin with). We don’t judge others; we suspect there is more to something or someone than meets the eye; we’re not petty; we give people the benefit of the doubt; we don't shut people different from us out -- we get to know them and find out where they are coming from; we assume good intentions; even with all we have on our plate, we try to help others in need when we can, and maybe most importantly, if we have other children, we instill these values in them. What’s the point of this post? To affirm what we all already know –- we’re generally pretty awesome people! Give yourself a nice big, well-deserved pat on the back!

Here is What I Really Want for Mother's Day:

2012-05-03T04:00:00Z

Here is what I really want for Mother’s Day:

I want time alone (maybe 3 hours or so) +
I want to know that the boys are happy and well taken care of while I’m having my time alone.

The time alone is not fun if I have a nagging feeling in the back of my mind that the boys are bored, or hungry, or being ignored, or that someone is being not as nice to them as they should be, or that their needs aren’t being met in some other way. I don’t want to come home to someone saying “whew! Thank God you’re back,” or to hear about the disasters there were while I was gone, or to someone saying “everything was great” but then the boys “telling” me (in their own way – yes, even the one that doesn’t talk) that they were sad or really missed me or were really bored, or someone was mean to them. I don’t want to come home to see that my younger one had a blast with the babysitter, and my older one sat by the door waiting for me to come back home. And I don’t want to come home to my younger one telling me that he didn’t think the babysitter “respected” my older one. I want to come back from my time alone and see some happy kids with happy faces and big smiles. I want them to not even have missed me at all (both of them). I want to hear stories about what an awesome time they had doing whatever – and in my dream world – about how they can't wait to do it again with whomever was watching them. In fact, I even want them to maybe be a little disappointed that I'm back so soon. That would be so, so, so awesome! If you know someone trying to think about what to get you for Mother’s Day, send them this post!

Night Special Needs Mom and Morning Special Needs Mom

2012-04-26T03:59:00Z

“I never get enough sleep. I stay up late at night, cause I’m Night Guy. Night Guy wants to stay up late. ‘What about getting up after five hours sleep?’, oh that’s Morning Guy’s problem. That’s not my problem, I’m Night Guy. I stay up as late as I want. So you get up in the morning, you’re exhausted, groggy… oooh I hate that Night Guy! See, Night Guy always screws Morning Guy. There's nothing Morning Guy can do. The only Morning Guy can do is try and oversleep often enough so that Day Guy loses his job and Night Guy has no money to go out anymore.”
- Jerry Seinfeld

I’m struggling with Night Me a lot recently. I come home from work around 7 pm; we face a couple of crises from then until the time I try to put the kids to bed. The kids finally go to bed. Then, I KNOW I should really get to sleep because: (1) in a few hours, one of the boys is going to wake up and either want to party it up, have some sort of semi-crisis, or want to sleep in our bed. Either way – giant disruption; or (2) I am behind on absolutely everything related to work and should get to work early to try to do a good job so I can continue to financially support this autism lifestyle of ours; or (3) I am pretending that I’m going to wake up early and exercise – and we all know how important exercise is to our well-being and stuff; or (4) Even if I don’t pretend to wake up early to exercise, I still have to wake up at 5:45 to get ready for the next day. 5:45 is only a few hours away by the time I get to bed or (5) All of the above. But Night Me won’t let me won't let me go to sleep. Night Me wants to see the PX90 infomercial, or the Brazilian Butt Lift commercial (I don’t know why I get so much satisfaction from watching those – but I really do; I think it is because I imagine I could one day be one of the “after” people), or reruns of Criminal Minds, or – if I’m being honest – reruns of Jersey Shore – and the new episodes of the Pauly D. Project (although I seriously thought Pauly D. was going to have a cuter group of friends that he hung out with). Night Me obviously doesn’t care too much about Morning Me. Night Me needs some down time. Just a little time to do absolutely nothing and not worry about what I’m late for. Morning Me has to be “on” all the time, and Night Me doesn’t. Unlike Seinfeld’s Night Guy, however, Night Me is just a teeny, tiny bit more concerned about Morning Me and will try to sacrifice for the good of Morning Me. It’s probably because Night Me knows that, unlike Seinfeld, I’ve got a couple of very expensive kids to financially support and otherwise take care of, and if I screw Morning Me over, I’ll be screwing the whole family over. But Night Me will really miss the infomercials, Criminal Minds, and most of all Jersey Shore!

How Old Is She?

2012-04-12T03:58:00Z

Between trying to get the home-front organized after the tornado that was Spring Break, and trying to catch back up at work, I did not have time to put together a post for this week. However, I did run across this funny post. I'd never broken down my reaction upon being asked how old my own giant non-verbal child is -- but Wach-A-Mole analyzes it well.

HOW OLD IS SHE?
The question seems innocent enough, right? Not even close. See, when it comes to a giant, 7-year-old nonverbal child with autism, it’s a loaded question. In fact, depending on the inquisitor and tone, it’s like the word “set” (which possesses the most definitions/uses in the English language - rumored to be in the 400s!). So, allow me to help translate it for you, since I imagine you won't find these definitions on Wikipedia. . . . .
HOW OLD IS SHE? (Tone: sweet, cloyingly sympathetic) . . .
HOW OLD IS SHE? (Tone: rushed, alarmed) . . .
HOW OLD IS SHE? (Tone: stern, accusing) . . .
HOW OLD IS SHE? (Tone: bright; speaker has child of similar age) . . .

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The Most Shallow Blog Post From a Special Needs Parent You'll Ever Read

2012-03-29T03:57:00Z

One of the things that upsets me the most about being a special needs parent (as I sit here after huffing and puffing – i.e., exercising – for the past 30 minutes) is the toll the special need took on my looks. I took one of those “Real Age” tests online, and I was happily answering all the questions and then I got to the following question: “Are you the parent of a child with Autism?” I answered yes, and it told me to add 10 years! The first few years after my son was born (I’d say the first 6 or 7), our life was so incredibly turned upside down that I could not even contemplate eating right or exercising. Those honestly felt like the luxuries of people that have things a bit more under control than I had during those years. Our son was HIGHLY unmanageable, we were trying to juggle work, the kids; we had virtually no support system. Every day it felt like we were one straw or step away from it all completely crashing or falling apart. So, anyway, I can’t even remember fully now – but I think we ate fast food and other non-home cooked meals for at least 4 years. That can make you look pretty bad,people. And I only starting exercising regularly again the past 2 or 3 years. So, the result is that I look crappy and fat. And as hard as I try, I can’t undo the damage now. The only way to undo it would be if I could get a “do-over” of my 30s. And it doesn’t make me feel better that I might look okay for an “Autism mom.” I want to look good for a plain old mom – actually, not even – I want to just plain old look good. And I firmly believe that if it had not been for the extra time, energy, money, hard work related to dealing with Autism, I would have!!! I watch this mom I know jogging every morning when I’m going to work, and she looks all skinny and athletic and stuff. And every time, I think –“if it weren’t for the whole special needs thing, I would have totally looked better than you sista!” There should be some natural law of the universe or something that rewards us special needs moms for all our hard work by making us look 10 years younger than we are. So, that everyone, is one of the things I am most upset about. I know it sounds shallow – but I’ve got to believe there are lots of other parents who feel this way too but maybe don't complain about it.